I've just printed off all my old posts from 2002 to 2006 (you can read some if you want); it appears the archives doesn't go back to 2001. The reason: My husband is going to be in a research trial of the new Pittsburgh compound PiB PET scan at the University of Pittsburgh April 12-13, in 9 days. I'm going to take all the records I can on his history since he was diagnosed with "minimal cognitive impairment" in 2001.

The Pittsburgh testing will hopefully show us whether he has amyloid in his brain, and that will indicate Alzheimer's, not just MCI. We hope for no amyloid to show up! This PET scan and another contrast PET scan are the first time they could see the amyloid in a living brain.

He is still doing pretty well on his meds but is talking less and doing less, and feels farther away and faded to me. Less eye contact. Wants to be alone every evening. Doesn't want to watch TV or movies with me.

About a month ago he had gotten kinda belligerent a few times, refusing to cooperate in situations that were important like in the middle of traffic (he's still driving). So now I avoid driving places with him, no more traveling out of town for sure. Anyway, he got angry that I "hadn't told" him something from family history that he had known. I lost it and yelled at him that he had known it, that he had forgotten but that he refuses to acknowledge that he has a memory problem. I pled with him to believe me and I told him I was sure he knew this fact and had forgotten. I made a mess of it, ended up apologizing and backing off, telling him we live in different realities and I'm not good for him anymore, others are better for him and he does better with them. I just remind him of failure. He became subdued and said a few things like he realized we didn't have conversations like we used to, we'd already lost some of that and it had been an important part of our life. So there were a few golden moments, and it was only the second time in 6 years I've done that, and it feels like elder abuse! Emotions he cannot handle....

But here's what came out of it. I talked to my family and told them we needed a new strategy, that I was concerned that if we let him live in the denial and pretend everything is normal that he is going to get belligerent and unmanageable. So I told them I wanted them to acknowledge when he forgot something or made a mistake, showing kindness and mercy, but not just covering for him. I began doing that to, like when he almost ran into a car because he thought the car was in park and took his foot off the gas, I just touched his head and said, "God bring healing..." He didn't react.

The week after we changed that strategy (we had a family meeting and I made a list of 20 things) my daughter happened across this research project on the internet and they wanted to talk to us by phone, and then they said they'd like Hu to be part of the test, and I was amazed! Only 23 with the MCI diagnosis will be a part of it, so we are very fortunate. I had given up on a clear diagnosis. The last time we went to the neurologist he told Hu he felt he was doing so well he was on a plateau. That wasn't very helpful, but I hope it's true!

Whatever the result we still have the symptoms to deal with. I've decided to get out of his way and get him to be with others more, to hide in the team, so I'm working during the day at my daughter's, keeping my computer over here, and he is spending time with other family members. I can see it's better for him already, and I've accepted the fact that he does better with others.

I am so fortunate to have 2 daughters and their families close by, and 2 of his brothers have come to live here to be near him and enjoy the mountains. We've been helping one of my SILs who has had mouth cancer and radiation treatment. She is doing well 2 months later. She and my husband, Hu, do really well together. They love to shop together. They have that bond of knowing they both perhaps have a short time left.

My son's business is thriving and so he has bought our house and has bought me long-term health care insurance, and has promised to watch over us financially when I cannot work. Hu does get social security now, I never did apply for disability, gave up on that. I am still working but it's wonderful to have a son to lean on now! He has 6 children. His business is www.bandwidth.com

I'm going to come here more often now, and will let you know the outcome of the testing. It is giving us a fresh start. I have heard that in June we will hear the results of the Alzhemed phase 3 trial, and it will show it improves people's brains. Hope!

Working at my daughter's the last 2 weeks, I find I laugh a lot more and feel so much more normal. After some grieving, I've adjusted to spending my evenings alone while Hu watches TV late into the night. I have even learned to go to movies alone!

Bless you all,
Mary Morken
mtdaily@aol.com

Mary, thank you so much for sharing the findings of test with us.The place you having him tested is suppose to be top notch in this area of medicine.I know the personality changes are difficult to deal with.Sometimes to be able to have some distance now and then helps.
Please keep us informed

Hello all,

Yesterday we got the conference call from the doctors in Pittsburgh. Several of our family were in on the call but only Hu and I asked questions.

They still give him just the diagnosis of MCI because the MRI and the FDG glucose metabolism scan showed no sign of atrophy, stroke, tumor, or patterns of metabolism seen with dementia, and his "paper and pencil" tests were pretty good.

They did express concern that his behaviors are like those of frontotemporal dementia, with rudeness, disinhibition, less verbal expression, and new artistic expression. So they recommended a spinal tap to see if he has the proteins that would indicate frontal lobe involvement.

So we plan to do that, and I've gone over the behaviors with him and while he argues about each specific I bring up, I asked him if he would try to change them just to please me, rather than arguing about whether they are disease or not. I made a list of 7 things, but if it's like before it will last about 3 days.

Since we will be going back to Pittsburgh in a year, I'm going to keep more written record of his symptoms to be able to report to them. I wish we had something more objective to go by, but will have to trust my own observations and my family's observations at this point.

Maybe this will help him not to defend his good memory all the time. I just said to him when he did it this morning, this is not primarily a memory thing, this is a behavior thing, a relational thing.

It was a wonderful encouragement to have the feedback of these doctors and to know we are contributing to some research that will eventually help others with dementias.

I worked at home for 2 weeks and found that I was again getting frustrated and I don't want to treat Hu badly so I am back working at my daughter's home during the afternoons.

We have taken a few walks together and had a few conversations. Tomorrow we will have a family brunch to celebrate 2 birthdays, and I will be so comforted by having the grandchildren around, they feel so normal and full of life! I have been enjoying gardening this spring, focusing on taking out the dead plants and trees that the winter or the elk got, rather than buying new plants. The music and scriptures on my Ipod are a wonderful help to me too.

I am left wondering what those doctors know from the PIB PET scan that they couldn't tell us about. Maybe it showed something in the frontal area? Maybe it didn't. We still live with mystery. Must be confident in my current strategies at least!

Blessings to all who care for mysteries! -Mary

Mary, first it seems your husband is going through a stage of difiance toward you.Just becareful as they can mistake things you say and do .They can become so defensive as they take things we say out of context.
So glad to hear your hubby was able to have testing down at the University of Pittsburgh.They have proven to be leaders in the field of research in this area.
I do hope you will feel compfortable enough to share their findings when you get them.I saved the site as I want to read more about them and their tesing.

We completed all the tests in Pittsburgh last week. We met Dr. Klunk and others, and they treated us wonderfully. Now we wait 4 weeks for a conference call where they will give us diagnostic information from all the tests except the experimental one, the PIB PET scan.

Here's a link about how Dr. Klunk and his friend discovered and developed the Pittsburgh compound dye that bonds with the amyloid plaques, giving the first picture of amyloid in a living brain. It's so encouraging, though they told us it would be another 2 years before the FDA approves it.

http://www.umc.pitt.edu/pittmag/spring2004/feature1.html

They interviewed me separately and it was wonderful to feel understood and supported.

Today Hu drove off when we had talked about his taking me to my daughter's before he went on an errand! When I called him he had 5 excuses to cover it. I just said, "I'll be more careful to make plans clear after this." I see I need to repeat more for him.

He really enjoyed the attention he got in Pittsburgh. But this time he couldn't fool them, they've got scans!

Mary

Mary, I was so pleased when I saw your post.It has been too long.I am glad hubby is having this done at this facility.They have done alot of reasearch in this area.Pittsburgh is about 85 miles from me.Excellent facility in this old steel town.
I have to say I am concerned that hubby is still driving.The signs are saying he could be a danger to himself and others.Soory hubby has chosen you to show his anger.But that is not unusual.MY hubby did this from the beginning.I do think you approach of not being as visable until you find answers is a good one.
You are fortunate to have your family there to be so supportive.Please keep us informed once you get tests results.Lucky to get the pet scan.Best for scanning .